Image description… This is a form letter with handwritten notes all over it, and complex to describe. I transcribed and formatted the form letter as closely as I could to the way it appeared, with descriptions of formatting I can’t get Tumblr to render enclosed in [square brackets].
Positioning of the handwritten notes is indicated by numbers within asterisks, e.g. *7* or *13*; descriptions of the notes each number denotes appear inline within the transcribed form letter, enclosed in (parentheses) to further distinguish them from the text of the letter, while the text of each note is set off by *asterisks* within the parenthetical description.
There are no [square brackets], *asterisks* or (parentheses) used in the original form letter. The letter did use bolding, italics, underlines, and changes in text size and color, so I wanted to avoid using any of those to indicate descriptions of any of the image’s elements.
I’m reasonably sure this will still be a somewhat confusing image description, but I couldn’t figure out any alternatives that would be less confusing. Suggestions and/or edits are welcome! :)
Finally, instead of following the usual Tumblr-image-description convention and enclosing the entirety of the description text in [square brackets] — since I used those to signify something else — I have instead set it off with HTML horizontal-rule lines above and below, and also added ALL-CAPS textual markers for those whose screen-readers may not recognize the hr tag, like so:
BEGIN IMAGE DESCRIPTION
Dear Dana Commandatore,
It really is shocking; *1* (the word “shocking” is circled; a line connects it to an upper margin note: *Why is it shocking?*) As I type this letter, one more set of parents will learn that their son or daughter has autism. And their lives will be forever altered.
*2* (a line connects “We” to a left-margin note: *It is genetics.*) We have to find out why. The Centers for Disease Control and Prevention have called autism a national public health crisis. We do not know its cause and there is no known cure. *3* (a short line connects “cure” to a note written beneath: *So, stop searching for one.*)
And that’s why I’ve written you today.
My name is Elizabeth Feld, and I am the President of Autism Speaks — the nation’s leading autism science and advocacy organization. *4* (a short line connects this sentence to a note written beneath: *So, why don’t you listen to autistic people?*)
Did you know that the diagnosis of autism has increased tenfold in the last decade? In fact, 1 in 88 children will be affected by some form of autism. That is over one million children.
I am asking you to help — to help someone with autism.
We really need your support… autism receives less than 5% of the government’s research funding available for many childhood diseases. *5* (a short line connects this sentence to a note beside it: *It is NOT a disease.*)
That makes your support all-the-more important. We cannot wait for public funding to come to us — we rely on caring friends like you. *6* (a short line connects this sentence to a note beside it: *I’m not your friend.*)
You allow us to forge ahead with great urgency. *7* (a short line connects this sentence to a note beside it: *I will do all I can to stop you.*)
*8* (a long line goes from the word “We” down the left margin to a note written in the extra-wide space between the sentence ending “make a difference now” and the huge blue “Yes!”: *except you leave autistic people out of the conversation*) We recruit the most brilliant scientific minds to answer autism’s baffling questions.
We focus on finding the causes of autism and developing medicines that will target autism’s core symptoms in ways that reduce disabilities and improve learning abilities.
Your donation today — no matter the amount — will have great meaning to individuals and families living with autism. *9* (a short line connects this sentence to a note beside it: *It will go towards funding a cure — and there is no cure, so it will go towards promoting more fear of autism.*)
Because when you give to autism speaks, you are contributing to our advocacy and research efforts that make a difference now. *10* (a short line connects the word “now” to a note in the extra-large space beneath: *You are contributing to ignorance.*)
*11* (see *8*) *12* (see *10*)
[begin blue text] [begin huge text]Yes![end huge text] I am proud to ease the burden of people and families with autism. [end blue text]
[begin small text] Please accept my tax deductible contribution of $_____
Please make your check payable to: AUTISM SPEAKS and return it along with this card in the envelope provided.
For credit card payments, please see other side. [end small text]
[Recipient’s name and address, with the address marked out with pen to redact everything except “CA” for California, and what looks like “Los Angeles” semi-legible under less-dense scribbles] *13* (a note is written in the space between the recipient-address block on the left and the AS identity block on the right: *Don’t ever send me anything again unless it is an apology to my son.*) [Autism Speaks logo with AUTISM SPEAKS underneath, followed by the hypocritical slogan “It’s time to listen.” and their website address.]
END IMAGE DESCRIPTION
This is the best thing I’ve seen this week.
I love how many notes this has gotten.
Rose, you are magnificent.
<3
Frankly, I’m baffled. I want to yell “where are you all coming from???”
Because my anti-A$ post has jumped about 500 notes as well in the past 72 hours or so.
“ease the burden of people and families living with autism”
Bringing this back again.
This is incredible. Thank you for posting this. This damn near made me cry
As someone with an autism spectrum disorder, this disgusts me so much I just want to throw up.
This needs to stop.
As a person who has a relative who is autistic, I will say that the comments made me laugh, but this entire letter made me want to punch someone in the face. How can someone be an advocate for Autism if they have absolutely no idea what they are talking about?
I started composing a brief answer to the question above, but it turned into a long-ish rant, so I turned it into a separate post: Autism Speaks does NOT advocate for people with autism, and it never has. I’d intended to reblog this with the link to my rant shortly after I posted my rant yesterday; adding the image description for the original letter wound up taking a while.
Source: goldenheartedrose
Another post about why Autism Speaks should STFU
(This started as a brief response to thispurplepoet’s question, “How can someone be an advocate for Autism if they have absolutely no idea what they are talking about?” and turned into a long-ish rant, so I decided to make it a separate post.)
Autism Speaks does NOT advocate for people with autism, and it never has. Rather, it advocates on behalf of parents (and/or other family members) who feel their autistic child (or other relative) is a burden to them — and, to a lesser degree, on behalf of “concerned” citizens who feel most or all autistics are a burden to “society” — and whose goals are as follows:
- ideally, a magic “cure” to make autistics become just like neurotypicals/alltistics;
- or at least close enough that we can “pass” for “normal”;
- failing that, some miracle drug or other medical intervention that would allow (or force) those of us on the “low-functioning” end of the spectrum to behave “normally” and/or live independently;
- or at least behave more “normally” and/or live more independently than before “treatment” (and some people are willing to go to very extreme measures in pursuit of these goals, cf. Judge Rotenberg Educational Center);
- finding a cause or causes for autism spectrum disorders, so that the victims (i.e., the families of autists, not autistic people ourselves) have someone to blame and/or sue — though finally, years after every reasonable scientist conceded that all evidence showed neither causation nor possible mechanism for causation (and multiple scientists and executives left AS over its refusal to stop wasting money on it) they seem to have given up on the vaccination-autism hypothesis;
- “educating” the public about what a horrible burden [sic] autistic children are on their families, partly in order to inspire donations;
- and also, in addition to the above: developing a magic injection, or genetic/fetal screening, or some other method that would/could prevent there being any more autistic people in the future.
- (Oh, and helping individual families of people with autism… but they spend less on that annually than on their executive salaries. Really, they’d be better off just not claiming they even do that.)
There are many thousands of people on the autism spectrum who do live mostly- to entirely-independently, and who are “verbal” or otherwise capable of communicating with other humans, and who are perfectly capable of advocating for ourselves.
I should know; I’m one of us.
Not surprisingly, many autists take a dim view of AS’s goal of genocide against us — and if you think that’s hyperbolic language, consider that there’s already a genetic test for at least one condition (so-called fragile X) that frequently occurs along with autism, and strong evidence both that most forms of autism are inherited and that most families into which one person with autism is born already have, or will have in the future, another family member or members with autism.
But many of us take issue with the other goals of Autism Speaks as well. If someone with autism can live semi- or fully-independently, with or without supports, but engages in stimming behaviors and rarely makes eye contact… well, so fucking WHAT?! Other (non-autistic) people have annoying personal habits, too, but it’s almost never seriously suggested that such people be subjected to electroshock torture or food deprivation to “cure” them of wearing too much cologne, or belching with their mouths open, or dressing like they’re auditioning for Jersey Shore.
Our biggest beef, however, is always going to be with the fact that, when actual autistics do speak (or otherwise communicate),
Autism Speaks ignores us.
To them, we are irrelevant. We’re the object, not the subject (grammatically speaking). They’re not advocating on behalf of people who are silent; they advocate on behalf of those who need us to remain silent, and it is no coincidence that they continue to promote the MYTH that autistic = nonverbal, over a quarter-century after Temple Grandin first made headlines.
* A note on language: There is no consensus among people on the autism spectrum about how we wish to be described, or how those who are not on the spectrum should be referred to when contrasting the two groups. No matter what terminology I choose, someone would take issue with it. Cycling through the most commonly known and/or preferred options (as far as I’m aware of them) seemed the best compromise; if I’ve offended any of my fellow autists, I apologize.
** Bonus points for everyone who spots the terrible pun I made with a very serious paragraph.
Happy Autism Awareness Month!
The world doesn’t understand me and I don’t understand the world, that’s why I’ve withdrawn from it.
Source: larmoyante
Why I am against Autism Speaks (made rebloggable by request)
Autism Speaks is the most well-known charity autism charity. Just because they have the most media coverage and celebrity support does not mean they are a good organization.
- Autism Speaks does not have a single autistic member on their board.
- Autism Speaks only spends 4% of their budget on “family services”.
- The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
- Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
- Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel but can still be found elsewhere.
- Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.
In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously. Autism is considered to be a child’s disease (not that it’s even actually a disease at all), and you will often hear people say “where are all the adult autistics?” Well, we’re right here in front of you. We may have been misdiagnosed with learning disorders, mental retardation and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now. We vary in where we fall on the spectrum. Don’t make assumptions about us because we can use a computer.
For further reading, here are a few resources about Autism Speaks:
Why Autism Speaks is No Good for Autistics.
Autism Speaks Does Not Speak for Me.
I’m Autistic, But Autism Speaks Doesn’t Speak for Me.
An Autistic Speaks about Autism Speaks.
A Chart Regarding Autism Speaks’ Allocation of Funds
Editing the original post so that I can include which Autism related charities to support. Let me say that besides the first one, all of them are very parent-oriented organizations, meaning that adult autistics may have issues with them. These are ones that I have either heard recommended highly by autistic parents (meaning autistic people who are parents, not “autism parents”) or that I’ve personally interacted with. None of them are perfect, but these are far better places to donate your money if you’re looking for a charity to support.
Autistic Self Advocacy Network
The Doug Flutie Jr. Foundation for Autism
The ARC (this is not autism specific, but our local one has a couple of autism-specific events, so was worth including).
ASAN Flyer about Autism Speaks
Edited 9/13/2012 to include this link, which is a news segment about a mother whose job offer with Autism Speaks was rescinded after she asked for accommodations in regards to caring for her autistic son. She later resolved the issue with childcare, but they rescinded their offer anyhow.
every once in a while i reblog this
ALWAYS REBLOG.
About a week ago, teland and I were in a doctors’-office waiting room where they had one of those looped edutainment/advertising videos playing. Mostly unobjectionable, though seeing the results of Sanjay Gupta’s recent(?) plastic surgery creeped us both out. Then… an ad for Autism Speaks came on.
I may have gotten a bit loud.
(via lebanesepoppyseed)
Source: goldenheartedrose
[Image: A three-panel comic. In each panel, a pale hand points in from off-panel at a person, with a speech balloon reading “You’re asking for it” coming from the same off-panel place. In the first panel the person is a pale person with red hair, short pink shorts, and a red top that reveals cleavage and midriff, holding a red cup. In the second panel the person is dark-skinned, wearing a hoody and baggy pants, and carrying skittles and iced tea. In the third the person is again pale, with short, styled blonde hair, slightly longer blue shorts than the first panel, and a rainbow-striped t-shirt, reading a newspaper with the headline “Gay teen suicide”]
[source] [edit by me: this is the actual source]
Hey kiddos, it’s unpopular opinion time.
I am so fucking sick of white, cisgender, gender-confirming men being the face of LGBT suicide and hate crime. Look at any study that has ever been done on the subject and it’ll tell you that transgender people (particularly trans* adolescents) are more at risk for suicide than any other segment of the queer community and trans women (particularly those of color) are the most at risk to be the victims of hate crime, making up nearly half of LGBTQ murder victims.
Now, I’m not saying what happened to likes of Matthew Shepard, Tyler Clementi or Jamey Rodemeyer isn’t sad; it is, but where is the outrage over Deoni Jones? Where is the call to action over Agnes Torres-Hernadez?
It’s hard to buy the self-congratulatory way liberals mourn certain LGBT deaths, while with so many more they simply DO. NOT. GIVE. A. FUCK.
Every time a white, middle class, cisgender gay man kills himself or is killed, you’d think they crucified Christ again.
But any time a queer person who falls outside that description is killed? Crickets.
Welcome to America, indeed.
Not to mention that the otherwise privileged LGB community has completely fucked up on ableism in a pretty grotesque way by marginalizing the fact that one of the people in the film “Bully” was Autistic. Because we just don’t fucking matter.
Also, the racism appropriation is way not okay.
Also it plays off the idea that PoC can only be PoC; the woman and the gay man are both white. Nevermind that the queers and the women with the highest murder rate are TWoC.
Then there’s also the fact that the rape of white women and the murder of black men aren’t at all comparable. Especially because white men often commit the latter in the name of protecting white women/white womanhood.
Gotta love how they all seem to be able-bodied, too. Now, it’s true I’m free to imagine that, let’s say, she has lupus, the second person is autistic, and he’s Deaf. (The Trayvon-representative figure in the middle is the only one ambiguously — or warmly — dressed.) But not all of us ‘enjoy’ the double-edged sword of invisible disabilities. And sure, maybe the first figure is Latin@, or maybe the third figure is east-Asian and bleaches their hair. I could choose to believe all three of them are trans* and either passing or closeted, too… but that doesn’t change the intention of the artist, or how most people will view the comic.
And +1 to all the other commentary added above.
Also, thanks to tal9000 for the image-description text! Always nice to come across one that’s already done. :·D
I wasn’t able to find the actual creator source for the comic, despite about an hour of looking (I said most of them take less than five minutes, not all!) as opposed to numerous sites that had posted it without attribution and frequently then had their postings linked to by other places on the internet — especially, though far from exclusively, here on tumblr. Okay, I feel dim now. The [source] link included in the reblog-thread above goes to friendlyatheist, who is not the actual source… but who did link to the actual artist’s post in their reblog. Somehow I overlooked that link when I was source-hunting.
Source: doodlepoop
Shelf-Stable Curry Entrees
My first low-spoons-food-options submission has gone live over at accessiblenom! (Or you can just read it here, right after the snazzy horizontal rule below the next paragraph.)
Definitely submit your own suggestions for food options with high food value (nutrition- and/or satisfaction-wise) but low effort required to prepare and eat them… and/or tips for avoiding allergens, ways around utensil-dexterity difficulties, dealing with texture intolerance, etc. over there, if you have any!
Let’s pool our knowledge, and remember that even if not everyone will need food options that fit your own particular medical needs, there will be someone; and resources like this can also be invaluable for anyone hosting a friend or family member with special dietary needs, too.
Shelf-Stable Curry Entrees have been a pantry staple in our household for years. They’re easy, delicious, and affordable.
You can stock up on them without worrying that they’ll spoil before you can use them all, because the use-by date is 2-3 years after production, and they’re usually fine for up to a year or two after the stamped use-by date, too. You’ll be able to tell if a package has spoiled without having to open it, though, because it will have swelled up (the pouches are designed to contain the gaseous products of decomposition without bursting, up to probably three or four times the volume of the contents at production time).
How simple are they to prepare? The packaging is a vacuum-sealed foil pouch with a notched, easy-to-tear-open (for people with moderately-impaired grip strength and/or moderately-impaired fine-motor ability; gripping/pulling with teeth, or cutting open with scissors, will also work) area at the top of the pouch. To heat them up, you can either open the pouch and pour the contents into a bowl to microwave them, or submerge the intact pouch in boiling water for a few minutes. Anecdotally, I’ve read that some strangers on the internet open the pouches and heat the contents in a saucepan; that would avoid the difficulty of opening the pouch when it’s hot from immersion heating, but would also mean the pan would need to be washed.
Because they’re fully-cooked, though, these curries can be eaten at room temperature, even directly out of the pouch with a long-enough utensil, which makes them ideal for emergency situations when power may be out. I find them palatable enough at room temperature, but some people with texture issues may not be able to eat them below certain temperatures depending on milkfat content or other factors.
All of the entrees are vegetarian, and many but not all are vegan. Some varieties contain nuts, seeds and/or seed oils not mentioned in the name of the curry, and some contain wheat and/or soy products, so check ingredients lists carefully if you have sensitivities to any of those foods. For those avoiding dairy products, be aware that “ghee” is clarified butter.
For readers unfamiliar with paneer, sometimes spelled panir, this is often translated misleadingly into English as cottage cheese, but it nothing like American cottage cheese. It’s made by a process similar to ricotta cheese, then drained of its whey, and usually cut into bite-sized square slices which resemble firm tofu (in appearance and texture) more than any kind of cheese.
The brand name we (teland.tumblr.com & I) usually buy is Kohinoor. Kohinoor’s website at http://www.kohinoorfoods.co.uk/products.asp?id=4 displays (some of) the varieties they sell. That link goes to the UK site but the same product, in slightly different-looking packaging, is also available in the States; in the northeast US, at least, they’re pretty much always available at Ocean State Job Lot, a chain discount store, for US$2 each. Sometimes regular grocery stores will carry one to three varieties (of Kohinoor or another brand) but they’re usually at least US$3 there, and sometimes significantly more.
Some manufacturers sell their heat-and-eat curries online, while others do not, but there are also numerous online retailers, in many countries, who carry one or more brands that can be shipped to your home.
Some other brands we have tried and liked include:
Kitchens of India
USA:
http://www.kitchensofindia.com/US/Products/Ready-to-Eat/Dinners
http://www.kitchensofindia.com/US/Products/Ready-to-Eat/Biryanis
Brazil:
http://www.kitchensofindia.com/BR/Products/Ready-to-Eat/Dinners
http://www.kitchensofindia.com/BR/Products/Ready-to-Eat/Biryanis/MTk00
Canada:
http://www.kitchensofindia.com/CA/Products/Ready-to-Eat/Dinners
Germany:
http://www.kitchensofindia.com/DE/Products/Ready-to-Eat/Dinners
http://www.kitchensofindia.com/DE/Products/Ready-to-Eat/Biryanis
MTR
http://www.mtrfoods.com/products/product_category/2
(names of individual products are in image form, navigation to select specific products & display of product details — e.g. ingredients where available — are via javascript, so may not be screen-reader friendly)*
http://www.mtrfoods.com/international_business
contact info for international distributors, which can probably help shoppers interesting in locating a retailer near them, anywhere from Bahrain to New Zealand.
TastyBite (can be purchased directly from their website)
• entrees http://shop.tastybite.com/Entres/c/TastyBite@Entrees
• rice varieties http://shop.tastybite.com/Rices/c/TastyBite@Rices
• these things http://shop.tastybite.com/Meal-Inspirations/c/TastyBite@MealInspirations
Amazon.com sells a bunch of brands and varieties of ready-to-eat curries, including a few brands we haven’t tried yet (specifically, Ashoka, Haldirams, and SWAD). If you’re in the US, click here to see search results for “ready to eat Indian food” in the Grocery & Gourmet Food department. For people in the UK, Canada or elsewhere, there may or may not be a similar range of shelf-stable entrees available via your country’s or region’s Amazon site.
Sometimes certain curries are available in a combo-pack that includes heat-and-eat basmati rice. Packages of both unseasoned and seasoned rice are also available. If you’re ordering online and shipping costs are an issue, obviously you’re better off cooking a big batch of rice at home and refrigerating or freezing meal-sized portions (or buying heat-and-eat shelf-stable or frozen rice from a store in your area). An important consideration with the combo-packs is how they’re packaged; some just have a second foil pouch filled with rice along with the pouch of curry inside the box, but often the curry and rice are in separate divisions of a microwaveable plastic tray sealed with plastic film, and the latter kind can be challenging to open even for people without grip-strength or dexterity issues. In our experience, the tray-packaged combos also aren’t as high-quality as the versions in the foil pouches, even within the same brand.
Note that almost all of these shelf-stable Indian dishes are spicy. Spiciness is so subjective, it’s always hard to know how someone else’s palate will react, especially because different people have varying tolerance for different kinds of ‘hot’ — chili pepper vs. peppercorn vs. cumin vs. mustard vs. horseradish vs. ginger etc., plus differences in preparation.
In our experience, the five least-spicy curries are the Methi Mutter Malai, the Paneer Butter Masala, the Mutter Paneer, the Dal Tadka, and the Dal Palak. The Biryani and Pulao varieties, which are seasoned rice rather than dishes to serve with or over rice, aren’t spicy at all.
Adding some plain yogurt (or raita, if you have it, though since we’re talking about least-spoons-available times, most likely you won’t) to any of these curries will help mitigate how ‘hot’ they are without — to our taste — rendering the meal too bland. There’s one curry called Kadhi Pakora (sometimes spelled Khadi Pakoda) that we always add yogurt to, even though it’s already in a yogurt-based sauce, because otherwise it’s too spicy for us.
One last note concerns the spellings of the various curry recipe names. These are always either transliterated or translated into English from Hindi or another language of south Asia that has its own alphabet, so neither translations nor transliterations are always consistent. I already mentioned the differing spellings and very bad standard translation of paneer, the homemade-style fresh cheese. Here are some more examples:
- aloo, meaning potato, may be spelled alu;
- dal, meaning lentils, may be spelled dahl;
- mutter, meaning green peas, may be spelled muttar, mattar, or matar;
- references to “gram” flour or “grams” (as an ingredient) mean dried beans, ones that have been ground in the case of flour;
- the presence of chickpeas (garbanzo beans) may be indicated with channa / chana or cholle / chole / choley;
- both palak and saag are often translated as spinach but (as I understand it) saag is a more-general term for the green leafy vegetable part of a plant that’s also eaten other ways, as in the dish called sarson ka saag which is supposed to be made with mustard (sarson) greens… but is sometimes made with spinach instead;
- pulao, a term referring to rice that is cooked together with seasonings and fruits, nuts and/or vegetables — rather than being a saucy dish to serve over rice — may be spelled pilao or pulav;
- korma refers to a cooking method, specifically that of braising vegetables and/or meat for a long time over low heat, and may also be spelled qorma, khorma, or kurma;
- navaratan (meaning nine jewels) may be spelled navratan or even navaratna, and, since the “nine jewels” refers to which nine vegetables, fruits and/or nuts are included in the dish, and the ingredients chosen can vary widely in different parts of India (and even at different times of year), this term is definitely a sign ingredients lists should be checked carefully;
- aspirated consonants’ extra ‘h’ may move around the word, commonly seen with bhindi/bindhi, ghobi/gobhi, khadi/kadhi, etc.
- some brands may label a curry by the city or region where it originated, for example Agra, Hyderabadi, Madras, Peshawar(i) or Punjab(i), while other brands omit that information, and, absent familiarity with Indian geography, it may not be obvious whether a word refers to an ingredient or a location;
- just when you’ve learned the native names for your favorite curries, some brand may start labeling its products fully translated, for example Peas & Mushroom Curry instead of Khumb Mattar (or Kumbh Mutter)…
We hope this helps others in search of meal solutions for when very few spoons are available! Impairment-wise, I have MS-related limb weakness and poor grip strength, the extents of which vary depending on where I am in my relapse-remission cycle, and Te (teland.tumblr.com) has lingering post-stroke grip strength and fine-motor issues, along with some texture intolerance for certain types of food. Neither of us can stand to cook for long, either, in her case due mainly to arthritis and in mine due mainly to POTS/NMH. We both also have fibromyalgia; the chronic pain it causes sucks up spoons, but many FMS symptoms improve with higher protein and fatty-acids intake, both of which are frequent nutritional features of the shelf-stable curries, and of course the endorphin release associated with spicy foods provides some pain relief as well.
*I didn’t want to make this post even longer than it already is, but if there is interest and need, Te and I would be happy to transcribe the information at the MTR site (or any other site with info about and/or selling direct-to-customers any of these shelf-stable curries) that’s not navigable for anyone, and put it in a separate post.
I couldn’t be happier that there are already two likes and a reblog, since that means (presumably) other folks who run low on ‘spoons’ (not referring to the literal silverware, but rather a brilliant metaphor used by people living with many different disability conditions) are finding the post helpful. Or I suppose able-bodied people who want and/or need cheap, easy, shelf-stable vegetarian meals might find the post equally useful… and they’re equally welcome to the info. Just please remember not to clean out a store’s entire in-stock supply — or take all the easy-to-reach packages and leave only the way-in-the-back top- or bottom-shelf ones! — so we can buy some, too, okay, able-bodied allies? :·D
Home from a long day of lobbying…
Just got home from spending the day at the state capital, lobbying my legislators to improve working conditions for home healthcare workers — like the people I rely on, daily, to help me with the things my assorted disabilities make difficult or impossible for me to do on my own.
The fact that this state has a “PCA” (personal care assistant) program for people like me is great for us, because we can hire whoever we want to have providing what’s often care intimate enough that it can feel invasive when we don’t have a say in who will be doing it.
We also get to control scheduling so that we can have the services we need outside the 7am-to-3pm hours visiting-nurse agencies typically insist their clients receive services during… meaning that, if we want to have our aides make us dinner at dinner time, or even provide transportation (and mobility, communication and/or other assistance as needed) to a restaurant so that we can enjoy a nice evening out, we can do those things. And we can have our aides work on Saturday or Sunday without worrying about the state refusing to pay the higher weekend rate most home-care agencies charge the state… often without actually paying the actual caregivers more for working weekend hours.
What sucks, though, is that the program treats our caregivers like crap. We decide what our employee aides will earn per hour… but there’s a cap on how high that pay can be, and it’s less than what someone with CNA, medication certification, or other accredited medical training can make if they go work for a home-care agency / visiting nurse association. This is despite the fact that it costs the state two to three times what home-care workers are paid by such agencies to have the agency provide home care, and the overhead for the PCA program is far more affordable than the administrative costs home-care agencies tack on to what they charge the state (or private insurers!) for providing similar services with ridiculous restrictions on what assistance can and cannot be given. As an example, agency-based aides can’t trim clients’ fingernails with a nail clipper — even if paralysis, arthritis, or lack of grip strength make it impossible for the client to do it themselves.
Our PCAs also get no workers’ compensation coverage (meaning that they’re just screwed if they’re injured on the job), no overtime pay, no mileage compensation, no health insurance, no vacations; not even sick days. It’s a shitty system, and I’d refuse to involve myself in it if I could get the care I need through a home-care agency. (I’ve tried it. It doesn’t work.) It’s unfair that PCAs are denied basic employment benefits, and as a person with multiple disabilities who relies on my aides on a daily basis, I want the PCAs I employ to care for me through this program to have reasonable employment benefits.
Most PCA employers like myself have difficulty finding people willing to work for them, because the home-care agencies (whose services, again, cost the state more to provide despite many such agencies refusing to make reasonable accommodations even though the reason clients need their services in the first place is due to disability) can pay their employees more than individuals like me can. I’ve been lucky not to lose any of my employees over that pay disparity… yet. But the aide I rely on most, who has been with me for six years now, has had to take a second job because I can’t pay her enough for her to be able to provide for her family, and that job is less-flexible in its scheduling and also demands full-time work-weeks from its employees, so the hours she’s available to work for me have been reduced.
The current system sucks for everyone involved. (Well, maybe not the for-profit businesses who overcharge the state for their lousy management ‘services’.) That’s why I borrowed against the spoons I otherwise would’ve had for the rest of the week so that I could go talk to state legislators and assure them that not only do I support changes to the program that would provide reasonable benefits for my employees, I actually believe it’s unfair for those benefits to be denied to them.
The state senator who represents my district has been a holdout, claiming to remain undecided on this issue, so it was particularly helpful for me to be able to say, ‘I live in your district, and so do all my PCAs, and we all want to see this legislation pass.’ That made me especially glad to have been able to go; I wasn’t just another face among the other citizen lobbyists there today. My state senator actually recognized me from our having met before at pre-election get-out-the-vote events, too; the consensus was that that worked in our favor in terms of winning that vote and getting that much closer to having the majority needed for the legislation to pass.
So I feel like I really accomplished something today… and I met a bunch of great people: fellow PCA employers, lots of PCAs, legislators firmly on our side, organizers, and even people who provide home care through an agency who support benefits and fair pay for their directly-employed colleagues. It was fantastic to be able to do more than just “armchair activism” again for a change; I have a lot of demonstrations and protests under my belt, albeit mostly from before I acquired my primary disability and could do things like march, or stand around holding a sign, for hours. (A lot of those kinds of activism events are unfortunately not made accessible to people with mobility issues or other kinds of physical disability.) Right now, the ‘fallout’ from how much energy I expended today hasn’t yet hit me, and I’m still coasting on a little wave of accomplishment.
I kept hoping a good conclusion for this post would come naturally as I wrote, but apparently that’s not happening. Oh, well.
[TW: discussion of the etymological derivation of a word some consider an ableist slur; mention of institutionally-protected ableist bullying] [cont’d]
[why] are so many people using the word “fucktard” today? it clearly derives from “retard” and is an ableist slur.
And “derp” (and variants)
…buhwa?
I thought “fucktard” was an enhancement of “bastard”…
When I’m going to insult someone, I prefer terms like “asshat” and “dickdouche” and “ignoramus”* myself, but I have been known to use “fucktard” (it’s part of how I pronounce the name written “Frank Miller” for one thing). And I wouldn’t have been using it if I thought anyone still considered ‘your parents weren’t married to each other at the time of your birth!’ seriously pejorative.
Although I was never called the R-word myself, in school, kids with intellectual disabilities who were in other divisions of our school system’s special-education program did. I’ve tried to avoid using the r-word myself since the first time I saw one of my friends’ reaction to having it flung at him. (I can — mostly, usually — pass for neurotypical nowadays, but as a kid I really couldn’t. And I rode a literal short bus with other ‘special’ kids from my end of town.) The attitudes of the teachers and administrators, aside from the social workers and some of the teachers with actual training in special education, typically ranged between turning a blind eye to taunting and bullying from the ‘normal’ kids, to joining in, to occasionally being the ones initiating verbal abuse. But us kids, the ones who were supposedly so hopelessly impaired? We never had any trouble figuring out that being othered sucked.
Given how recently-coined “fucktard” is, though, I suspect it may be tricky tracking down when or where it originated. To say nothing of figuring out which pre-existing word(s) it actually derived from… :·|
* Although dictionaries often define “ignoramus” as simply meaning the same as fool / idiot / uneducated person, without any mention of connotation or usage, “Ignoramus is commonly used in the US, the UK, and Ireland as a term for someone who is willfullyignorant.” [emphasis mine]
If it was generally pronounced with a schwa in the second syllable, I might agree, but everyone I know comes down hard on the a, like people do in ret*rd and t*rd.
I see your point about where the emphasis is, but I can’t think of another construction using the phoneme “fuck” where there isn’t emphasis on that syllable. Consider “motherfucker” for example: whether the first or third syllable has primary emphasis varies, both by speaker and by context, but whichever isn’t given primary emphasis is always given secondary emphasis, as far as I’ve ever heard: mo·ther·fuck·er vs. mo·ther·fuck·er. And it can also be pronounced with equal emphasis on both the first and third syllables, which often happens when the whole word is drawn out.
Just to be clear, since it seems “fucktard” is perceived to be a variation of the R-word, I am going to stop using it. I don’t go around using variations of the N-word just because they’re not written/pronounced identical to n——r, and I’m very careful how I enunciate words like “niggardly” precisely to make clear I’m not saying it (though I also don’t think I’ve ever said that word other than in conversations about how easily it can be mistaken for a variation of the N-word). Not that racist slurs are exactly equivalent with ableist slurs, I don’t participate in Oppressions Olympics.
Plus, it’s generally used with a contempt for the target’s intelligence.
Hunh. In my experience, it’s more analogous to the meaning of “asshole” than “dumbass” — certainly that’s how I’ve been using it, to indicate that I believe someone is knowingly behaving badly towards other people, rather than that someone is ignorant (even willfully ignorant) — but I’m also old enough to have the privilege of being able to mostly avoid the company of people under the age of thirty, so if tweens, teens and/or twenty-somethings-who-ought-to-know-better have been using it the way you describe, that would explain why I’ve managed to remain unaware of that usage.
Also, it appears to be the general consensus that it’s not from bastard. If you google “fucktard etymology,” it’s generally concluded to be from ret*rd.
Folk etymologies are frequently more widely believed than the true etymology of the same word, though. Consider how many people honestly believe “fuck” itself began as an acronym from For Unlawful Carnal Knowledge.
Oh, and it’s generally much easier to track down etymologies of recently coined words.
That depends on what kind of word it is, and who coined it. If it’s a neologism that originated with one person in an easily-documented setting, as is the case with “cellphone” and “schwing” and “snowclone” and “womanism,” then yes, it’s quite easy to track the etymology of the word. But words that originated in casual oral use, and only much later came to be documented, often leave even folklorists baffled as to where and when the word was first spoken, much less how, why or from what existing word (if any) the new one developed.
“Woobie” is an excellent example of this latter type of word; the definitions given at fanlore and TVTropes trace back to an earlier meaning of “woobie” referring to a child’s security blanket, but how “woobie” came to have the earlier meaning in the first place is completely unknown. From what I can tell there hasn’t been any effort to determine the earliest written attestation of “fucktard” and even if one could be definitively identified, the word was almost certainly in oral use before being written down (or typed out) for the first time.
tl;dr:
I am a giant linguistics geek and could go on about etymology and connotation and suchlike all day, but the important thing is that
▶▶ I agree that use of the word “fucktard” should be avoided. ◀◀
Source: unpocalypse
[TW: discussion of the etymological derivation of a word some consider an ableist slur; mention of institutionally-protected ableist bullying]
[why] are so many people using the word “fucktard” today? it clearly derives from “retard” and is an ableist slur.
And “derp” (and variants)
…buhwa?
I thought “fucktard” was an enhancement of “bastard”…
When I’m going to insult someone, I prefer terms like “asshat” and “dickdouche” and “ignoramus”* myself, but I have been known to use “fucktard” (it’s part of how I pronounce the name written “Frank Miller” for one thing). And I wouldn’t have been using it if I thought anyone still considered ‘your parents weren’t married to each other at the time of your birth!’ seriously pejorative.
Although I was never called the R-word myself, in school, kids with intellectual disabilities who were in other divisions of our school system’s special-education program did. I’ve tried to avoid using the r-word myself since the first time I saw one of my friends’ reaction to having it flung at him. (I can — mostly, usually — pass for neurotypical nowadays, but as a kid I really couldn’t. And I rode a literal short bus with other ‘special’ kids from my end of town.) The attitudes of the teachers and administrators, aside from the social workers and some of the teachers with actual training in special education, typically ranged between turning a blind eye to taunting and bullying from the ‘normal’ kids, to joining in, to occasionally being the ones initiating verbal abuse. But us kids, the ones who were supposedly so hopelessly impaired? We never had any trouble figuring out that being othered sucked.
Given how recently-coined “fucktard” is, though, I suspect it may be tricky tracking down when or where it originated. To say nothing of figuring out which pre-existing word(s) it actually derived from… :·|
* Although dictionaries often define “ignoramus” as simply meaning the same as fool / idiot / uneducated person, without any mention of connotation or usage, “Ignoramus is commonly used in the US, the UK, and Ireland as a term for someone who is willfullyignorant.”
(via madgastronomer)
Source: unpocalypse
![{(PLEASE leave image description intact when reblogging!)}
Image description… This is a form letter with handwritten notes all over it, and complex to describe. I transcribed and formatted the form letter as closely as I could to the way it appeared, with descriptions of formatting I can’t get Tumblr to render enclosed in [square brackets].
Positioning of the handwritten notes is indicated by numbers within asterisks, e.g. *7* or *13*; descriptions of the notes each number denotes appear inline within the transcribed form letter, enclosed in (parentheses) to further distinguish them from the text of the letter, while the text of each note is set off by *asterisks* within the parenthetical description.
There are no [square brackets], *asterisks* or (parentheses) used in the original form letter. The letter did use bolding, italics, underlines, and changes in text size and color, so I wanted to avoid using any of those to indicate descriptions of any of the image’s elements.
I’m reasonably sure this will still be a somewhat confusing image description, but I couldn’t figure out any alternatives that would be less confusing. Suggestions and/or edits are welcome! :)
Finally, instead of following the usual Tumblr-image-description convention and enclosing the entirety of the description text in [square brackets] — since I used those to signify something else — I have instead set it off with HTML horizontal-rule lines above and below, and also added ALL-CAPS textual markers for those whose screen-readers may not recognize the hr tag, like so: BEGIN IMAGE DESCRIPTION
Dear Dana Commandatore,
It really is shocking; *1* (the word “shocking” is circled; a line connects it to an upper margin note: *Why is it shocking?*) As I type this letter, one more set of parents will learn that their son or daughter has autism. And their lives will be forever altered.
*2* (a line connects “We” to a left-margin note: *It is genetics.*) We have to find out why. The Centers for Disease Control and Prevention have called autism a national public health crisis. We do not know its cause and there is no known cure. *3* (a short line connects “cure” to a note written beneath: *So, stop searching for one.*)
And that’s why I’ve written you today.
My name is Elizabeth Feld, and I am the President of Autism Speaks — the nation’s leading autism science and advocacy organization. *4* (a short line connects this sentence to a note written beneath: *So, why don’t you listen to autistic people?*)
Did you know that the diagnosis of autism has increased tenfold in the last decade? In fact, 1 in 88 children will be affected by some form of autism. That is over one million children.
I am asking you to help — to help someone with autism.
We really need your support… autism receives less than 5% of the government’s research funding available for many childhood diseases. *5* (a short line connects this sentence to a note beside it: *It is NOT a disease.*)
That makes your support all-the-more important. We cannot wait for public funding to come to us — we rely on caring friends like you. *6* (a short line connects this sentence to a note beside it: *I’m not your friend.*)
You allow us to forge ahead with great urgency. *7* (a short line connects this sentence to a note beside it: *I will do all I can to stop you.*)
*8* (a long line goes from the word “We” down the left margin to a note written in the extra-wide space between the sentence ending “make a difference now” and the huge blue “Yes!”: *except you leave autistic people out of the conversation*) We recruit the most brilliant scientific minds to answer autism’s baffling questions.
We focus on finding the causes of autism and developing medicines that will target autism’s core symptoms in ways that reduce disabilities and improve learning abilities.
Your donation today — no matter the amount — will have great meaning to individuals and families living with autism. *9* (a short line connects this sentence to a note beside it: *It will go towards funding a cure — and there is no cure, so it will go towards promoting more fear of autism.*)
Because when you give to autism speaks, you are contributing to our advocacy and research efforts that make a difference now. *10* (a short line connects the word “now” to a note in the extra-large space beneath: *You are contributing to ignorance.*)
*11* (see *8*) *12* (see *10*)
[begin blue text] [begin huge text]Yes![end huge text] I am proud to ease the burden of people and families with autism. [end blue text]
[begin small text] Please accept my tax deductible contribution of $_____
Please make your check payable to: AUTISM SPEAKS and return it along with this card in the envelope provided.
For credit card payments, please see other side. [end small text]
[Recipient’s name and address, with the address marked out with pen to redact everything except “CA” for California, and what looks like “Los Angeles” semi-legible under less-dense scribbles] *13* (a note is written in the space between the recipient-address block on the left and the AS identity block on the right: *Don’t ever send me anything again unless it is an apology to my son.*) [Autism Speaks logo with AUTISM SPEAKS underneath, followed by the hypocritical slogan “It’s time to listen.” and their website address.]
END IMAGE DESCRIPTION
thispurplepoet:
just-a-skinny-boy:
edgegunnerfan:
goldenheartedrose:
sanityscraps:
goldenheartedrose:
tee-m-kris:
lindsayface47:
This is the best thing I’ve seen this week.
I love how many notes this has gotten.
Rose, you are magnificent.
<3
Frankly, I’m baffled. I want to yell “where are you all coming from???”
Because my anti-A$ post has jumped about 500 notes as well in the past 72 hours or so.
“ease the burden of people and families living with autism”
Bringing this back again.
This is incredible. Thank you for posting this. This damn near made me cry
As someone with an autism spectrum disorder, this disgusts me so much I just want to throw up.
This needs to stop.
As a person who has a relative who is autistic, I will say that the comments made me laugh, but this entire letter made me want to punch someone in the face. How can someone be an advocate for Autism if they have absolutely no idea what they are talking about?
I started composing a brief answer to the question above, but it turned into a long-ish rant, so I turned it into a separate post: Autism Speaks does NOT advocate for people with autism, and it never has. I’d intended to reblog this with the link to my rant shortly after I posted my rant yesterday; adding the image description for the original letter wound up taking a while.](http://24.media.tumblr.com/tumblr_mb8wgwS6fv1r2i8g6o1_1280.jpg)


